Guest post: "I shouldn't have to change my son on toilet floors"
Blogger and campaigner
Posted on: Wed 04-Jan-17 15:55:39
(49 comments )
Toilets aren't often considered news. Most people just – go. But when Paralympian Anne Wafula Strike shared her story of being forced to wet herself on a train, she drew attention to the fact that, for many people, going to the toilet isn't as simple as it should be.
Wafula Strike was on a three-hour train journey where there was no accessible toilet available. She was left to urinate where she sat: humiliated and stripped of her dignity. This is unacceptable. Going to the toilet is a basic human right – for everybody.
My family know all too well how often this right is denied, which is why I campaign for fully accessible toilets, better known as Changing Places.
Imagine this. Your child is incontinent due to their disabilities, and as a result they wear nappies. Where do you change them when you go out? Baby changing tables are fine when they're little - but what happens when they get too big? And, in the future, how will they cope as incontinent adults? What happens if they are able to use a toilet, but can't physically manoeuvre themselves on to one?
In 2017, this is what happens:
You have to leave where you are with your loved one – an event, a shopping trip, a day out to the seaside, even hospitals - and take them home in the car, while they sit in their own urine or faeces.
Imagine this. Your child is incontinent due to their disabilities, and as a result they wear nappies. Where do you change them when you go out? Baby changing tables are fine when they're little - but what happens when they get too big?
You have to change them in your cold uncomfortable car boot in front of passers-by.
You have to change them on the toilet floor, home to tens of thousands of germs, if they can't weight-bear to be changed standing up.
This is my reality, and the reality of thousands of others in the UK. My son Brody is nearly five years old. Primarily undiagnosed, he has severe learning difficulties, autism, epilepsy and physical disabilities that mean he cannot walk distances and can easily fall over. He is in nappies 24/7 and we don't know if this will ever change.
But this situation we find ourselves in – the huge lack of truly accessible toilets, ones that cater for ALL disabilities – this has to change.
At the moment, the Equality Act doesn't protect Brody and other disabled people like him because providing the kind of accessible facilities they require isn't seen as a 'reasonable adjustment'. But is it reasonable that I have to change my son in car boots or on toilet floors?
I don't even like touching the flush in most public toilets. And I definitely hang my bag on the hook provided on the back of toilet doors. It's good that our bags are thought of though, isn't it?
Of course, it isn't practical to have a Changing Places toilet in every local café. But if there were no public toilets available in shopping centres, supermarkets, leisure centres, hospitals, the world would take notice. If someone took away all of the baby changing stations in public toilets there would be national outcry. Still, the needs of disabled people are ignored, because they are the needs of the few, not the many.
There's a saying that goes "the disabled population is the world's largest minority of which anyone can become a part at any time". It's worth remembering this. This problem might not affect you or anyone you love today. But tomorrow it could. It could affect you, your child, your parents or your friends. And trust me - it's not a pleasant situation to be in.
So, next time you see an 'accessible toilet', ask yourself whether it really is accessible for everyone.
Next time you use a public toilet, look at the floor and imagine having to lay your child on it.
Next time you open your car boot, imagine trying to find the space to comfortably and discreetly change your child there – without the world watching.
Next time you're on a family day out, imagine there are no toilets for your children to use.
Ignorance is bliss. The reality is not. My son deserves respect, dignity and inclusion. He deserves the same rights as other children. He is different. Not less.
Changing Places toilets provide a larger space for a disabled person and their carer(s). An adult sized changing bench, a peninsular toilet and a hoist. You can find out more about them here. You can also help by signing this petition.
By Brody, Me and GDD
Thankyou for this post. My son is 6 and a half, and like your son he is undiagnosed. He has very limited expressive speech, sensory issues, mobility problems and complex health issues. He is in nappies and as he has problems with his bowels, it is necessary to change him lying down. Changing when out is a nightmare - if there is a disabled toilet available they are not usually fit for purpose - a changing table suitable for a baby but useless for an older child or adult (they are not even suitable for a parent in a wheelchair to change their baby) The floor is often filthy and wet, I carry around a cut down picnic rug, and a cloth nappy insert (along with wipes, nappies, cleansing foam, happy bags and cream!) for ds to lie on. Sometimes there is no disabled toilet and we have to squeeze in to a normal cubicle, ds has his head pressed against the toilet, visible under the cubicle door, and if someone uses the hand dryer, he goes into a complete sensory meltdown.
No wonder ds is scared of toilets.
Finding a changing places toilet is such a huge relief - it really does make an enormous difference.
Along with signing the petition, I urge people to write or email attractions, museums, supermarkets, shopping centres, services and hospitals (you would think, with the amount of time ds spends in hospitals, that there would be at least one changing place toilet!) When we go to an attraction I often photograph the floor where I have had to change ds - then emailed this to them, along with information about changing places.
I'm a learning disability nurse & this is a massive massive issue when taking out clients out.
Folk in wheelchairs & no way to get them out without a hoist etc if they need changed.
It really limits where we can go.
Thank you, I know a lot of people campaigning here for this. So important.
Emailing a picture of the floor is a great idea, hazey. We no longer have to deal with poo on a regular basis, but my DS does still have to take his shoes off. All too often the floor is grim and we have gone 5 or 6 hours without finding anywhere to change him, in the past which was decidedly uncomfortable.
This is heartbreaking, I get pissed off when there is no where to change my 4 week old. You shouldn't have to go through this. I've signed the petition.
Just so moved by this. We have to change our tiny son on the floor all of the time, or in the pram
, or in the boot. But it doesn't compare to the agony of what you're enduring.
Thank you for highlighting something so important.
I'll sign the petition. All the best. Carry on being such an amazing parent xxx
I know of adults who have had to be changed on toilet floors although I haven't experienced it first hand (I'm a support worker for adults with LD) For many it's either that or do not go out for the day/ go shopping/ to the theatre/ sports/ music concert etc.
i hope the public get behind this, it affects so many people...
You have my support for the changing places campaign.
I definitely support this. What an awful way of living for all the poor families out there, NOT acceptable. On a positive note, I went into a brand new Weatherspoons the other day and the enormous baby change/disabled toilet house an adult sized change table and hoist. Maybe things are slowly changing...
Our son is 7 and, yes, things are slowly changing for the better. But today's feature on the BBC, and these blogs, will hopefully help to change things a little faster
Signed and supported. With the population aging, this is going to affect more people and we should have started it years ago.
Signed and supported. Mother of an eighteen year old doubly incontinent Son.
It's swimming pools that seem to be the most likely buildings to have fully accessable rooms .... though one I've used most often the hoist was out of order more than not !
I seem to recall that a day centre was listed on the list our county published of buildings with fully inclusive toilets.
This issue has never even occurred to me, I'm ashamed to say.
I've signed the petition.
Message withdrawn at poster's request.
I am old enough to remember when baby changing facilities and accessible toilets simply didn't exist anywhere. I used to have to take my baby back to the car park and change his nappy on the back seat.
It was only through vigorous campaigning that change was effected and local authorities, larger shops and shopping centres began providing these services and the provision of accessible facilities was enshrined in regulation.
Thank you OP for bringing the difficulties faced by your son and others to everyone's attention. Good luck with your campaign.
I work with people with learning disabilities and their carers and this has never occurred to me.
It is a terrible situation and I cant see how anyone wouldn't support a change. I will sign the petition now but also will now be aware.
Message withdrawn at poster's request.